Josh’s Story

Josh’s Story

Josh Minton thought he was invincible. A 27-year-old Army Captain in peak physical condition, Josh had already been through what he thought would be the biggest challenges of his life – four years at West Point and a tour of duty in Afghanistan as a Field Artillery Officer – and he survived both with aplomb. Engaged to be married, with a clear path forward in the Army, Josh planned confidently for his future.

While training at Fort Still in Oklahoma, Josh got checked out for what he thought must be a kidney stone. To his great surprise, he instead received a diagnosis of an incurable form of neuroendocrine cancer. He shipped off to Walter Reed National Military Medical Center, leaving behind his comrades and far from his roots in Ohio. He withdrew from the world and separated from his fiancée, in denial about his new reality.

Over the next six months of chemo and self-imposed isolation, Josh processed his situation and little by little began to shift his perspective. He learned about the young adult support group at Walter Reed, run by UCF Patient Navigator Meg Fitzgibbons, and decided to give it a try. He found the group to be dynamic and flexible, and enjoyed sharing awkward moments of hilarity as well as poignant and sad reflections with his new peers.

 

Josh now reflects that the emotional challenge he continues to face is harder than any physical or tactical task he has encountered. Getting support from people at UCF and Walter Reed who could truly empathize with him, Josh – ever stubborn – rallied and decided to give support to others. He has shepherded fellow officers and enlisted through their cancer experiences, developing relationships he knew would end in heartbreak, but having the courage to do it anyway. He has completed physical feats – a half marathon, a60-mile walk, and UCF’s Key to Keys – to keep perspective, focus on the positive, and honor those who have gone before him. He has taught high school students how to be there for their friends who have cancer or chronic illnesses, and addressed elected officials at a Cancer Moonshot summit.

His body may not be invincible, but his spirit surely is. Josh, we salute you!

MJ’s Story

MJ’s Story

Meet the newest member of UCF’s Body of Young Adult Advisors (BOYAA): Marissa Hayes, also known as MJ.  Through her BOYAA service, MJ is poised to be the epitome of one of our organizational pillars: giving and getting support. Coming to BOYAA as the recipient of its 2017 scholarship, she quickly came to appreciate the community BOYAA creates and signed on to help raise funds to award future scholarships, and to give hope to other young adult survivors by sharing her story.

The fourth of seven siblings, MJ has, by necessity, learned to fend for herself. When she experienced consistent shoulder pain that she couldn’t chalk up to wakeboarding or perfecting her round-off/back handspring/back tuck combo, she persisted in seeking an answer after being told by several practitioners that she just needed physical therapy. While finally meeting with an orthopaedic cancer specialist, she received the news – alone, at 18 – that she had Ewing sarcoma.

MJ moved from Oregon, where she was enrolled at Oregon State University, to San Francisco, to seek treatment. She endured a year of chemotherapy and radiation, with some harsh side effects. Choosing this path of treatment instead of surgery, however, enabled MJ to continue as a Formula 3 driver – ultimately ranking 8th out of 40 in her nation-wide class!

As is UCF tradition, MJ has turned her frustrations into action. Feeling out of place in the pediatric hospital, she got involved with its AYA youth advisory council and social group. Inspired by a few of her caregivers, MJ has set her sights on becoming an acute care pediatric nurse practitioner – a position that will enable her to work specifically with the AYA population. Bolstered by the UCF scholarship, MJ is now enrolled in an 18-month program at theJohns Hopkins School of Nursing. Strengthened by the support she is currently getting from UCF, there’s no telling how much support she will ultimately give to others.

Iron Girl Columbia Triathlon to Host First Disabled Woman Triathlete

On Sunday, August 16, 2015 approximately 1800 women, ranging in age from 13 to 80, will participate in the 10th Annual Iron Girl Columbia Triathlon. Among those women will be Columbia, Maryland’s very own Defu Fekadu, the first disabled woman triathlete to participate in this race.

A Columbia, Maryland staple and an introductory triathlon for many women in the area, the Iron Girl Columbia Triathlon is an inspiring women’s event on many levels, but getting a glimpse of Defu and her team at this year’s race is sure to be the most inspiring sight to see. Defu will be supported by a team of women from Athletes Serving Athletes, a non-profit organization that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Athletes Serving Athletes (ASA) provides the assistance of able-bodied volunteers termed “Wingmen” and Defu will not only be the first disabled woman to participate in this event, but ASA will also provide for the first time, a complete team of women “Wingmen” to support her along the way.

The team consists of swimmer, Aleah Zinalabedini; biker, Melinda Peters and runner, Kerry Blackmer who will all work together with the help of their team leader, Jennifer Roussillon to assist Defu across the Iron Girl finish line. When asked about Defu and the experience so far, the ASA Wingmen each have an empowering and inspiring story of their own to share.

“Defu told me that ASA has given her a voice,” said Melinda Peters, biker wingman. “I think she is brave, not only for competing in this race but for constantly motivating and teaching others that they too can do anything they put their mind to.”

“I’m truly honored that Defu and ASA are giving me the opportunity to swim with her in this year’s Iron Girl,” said Aleah Zinalabedini, swimmer wingman. “I am consistently inspired by her beautiful smile, incredible outlook on life and ability to work through her fears with grace.”

“I’ll never forget the first time I met Defu,” said Kerry Blackmer, runner wingman. “I’m not sure that I realized then the profound impact Athletes Serving Athletes and Defu would have on my life.”

It is easy to get caught up in medals, times, awards and personal records in a race like the Iron Girl Columbia Triathlon. Team Defu stands as a reminder that this race means so much more than that. This race, and anything like it that is a true test of physical strength and mental endurance, is about empowerment and finding the courage to do something that might seem impossible.

“Just like any athlete, Defu, has been training for Iron Girl. She has gone outside of her comfort zone and continues to push forward,” said Jennifer Roussillon, team leader. “Simply put, Defu is the epitome of what it means to be an Iron Girl, and I am honored and humbled to be on this journey with her.”

The 10 Year Anniversary of the Iron Girl Columbia Triathlon will take place on Sunday, August 16, 2015 in and around Centennial Park in Columbia, Maryland. The race will start with the swim portion at approximately 6:50 a.m. and continue through the late morning. For more details on the event and to view results after the event, visit www.ulmanfund.org/ucfraces/ .
About the Ulman Cancer Fund for Young Adults & UCF Races

The Ulman Cancer Fund for Young Adults (ulmanfund.org) is a non-profit, 501(c)(3) organization that changes lives by creating a community of support for young adults and their loved ones impacted by cancer. Founded in 1997, the Ulman Cancer Fund for Young Adults works at both the local and national level to ensure that all young adults impacted by cancer have a voice and the necessary resources to thrive.
UCF Races was established in 2010 to further the mission of the Ulman Cancer Fund for Young Adults. UCF Races produces first class endurance events that enrich the community, celebrate the achievements of every participant and ultimately spread awareness of the young adult cancer fight.

 

About Athletes Serving Athletes

Athletes Serving Athletes (ASA) is a non-profit organization located in Maryland that empowers athletes living with disabilities to train and compete in mainstream running and triathlon events. Most ASA athletes have very limited to no mobility and compete with the assistance of able-bodied volunteers termed “Wingmen” (men and women, young and old, fast and slow). ASA offers innovative athletic training, supportive mentor relationships, and high quality endurance events for athletes living with disabilities – all of which are free of charge to the individuals and families served. To support or learn more about ASA please visit: www.athletesservingathletes.org

You Are A BadA$$!

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#facingtheissues, by Ceili Leahy, an 18-year old Ewing’s Sarcoma with secondary AML survivor

“No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.”

I’m sure you’ve heard this about a million times from your doctors, your psychologists, your parents, and pretty much anyone else who cares about your sanity, but do not google your cancer. And, more importantly, do not google your prognosis. I’m sure there’s this massive part of you that’s dying to take a peek, just a little browse through the infinite files available to you on the Internet, ranging from papers by the most knowledgeable sources out there to chat room speculations from people who have never even been through a high school biology class. And while there’s a lot of good information out there, it’s not what you need right now.

For those of you who know your prognosis already, whether you were told by your doctor, had a friend slip up and tell you, or (God forbid) you googled it, this part is for you.

Your prognosis was likely given you in the form of a percentage. Whether you’ve got a 99% chance or a 5% chance of kicking this cancer’s ass, you have cancer. So let yourself freak out a little (just a little.) It kills me when kids say, “Oh, I had X cancer, so compared to most cancers it was easy.” No cancer is easy, period. The reason I say this is not to freak you out, but because I think some people don’t give themselves enough credit for how incredibly badass they are.

Back to the numbers. You may have had this explained to you already, but your prognosis is based entirely off of statistics, AKA there’s not necessarily anything you have in common with the rest of the population being used other than that they have your cancer. And a statistic like that can only tell you so much. For example, it doesn’t tell you which of the participants skipped chemo treatments, which ones were treated at under-funded hospitals, which ones only ate Funyuns for a year, or which ones had to travel eight hours to get to their clinic. It tells you nothing about the individual, just the basest information about the group as a whole. The way I see it, even one hundredth of a single percent is infinite for you. Even that miniscule chance represents someone, so why not you?

“If I didn’t have my confidence or my will, what did I have?”

I’ll share a secret with you: I looked at my prognosis. Granted, I did last several months without looking, but I looked nonetheless. I had 15% chance of surviving, and if you would believe it, finding that out made me so damn proud. Because at that point, I’d already overcome some serious junk. I’d made it through weeks of esophageal mucositis, severe dehydration, the entire first stage of chemotherapy, and all 35 body-breaking sessions of radiation. And if I could survive that, I could get through anything. The thing is, I’m not sure I could have made it through all that if I had known what my chances were from day one. I mean, 15% is pretty bad; not the worst, but it’s no cupcake either. I’m not sure I would have been so confident in myself, and in my experience the mere will to survive is greater than any drug or treatment out there. If I didn’t have my confidence or my will, what did I have?

So if you’re reading this and have resisted the urge to check out your odds until now, please, please, please wait. There’s a right time, and a whole lot of wrong time, but when it’s right you’ll know. And whenever that time comes, go ahead. That number will probably be a point of pride for the rest of your life

“Many survival case histories show that stubborn, strong willpower can conquer many obstacles. One case history tells us of a man stranded in the desert for eight days without food or water; he had no survival training, and he did nothing right. But he wanted to survive, and through sheer willpower, he did survive. With training, equipment, and the will to survive, you will find you can overcome any obstacle you may face. You will survive.”

-Survival manual of the US Army

No Instruction Manual For YA Cancer

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#facingtheissues, Meg Fitzgibbions & Jenna Hearndon

Jenna is a 26 year-old caregiver to her 27 year-old active duty husband, Josh, who has grade II gliomatosis cerebri. This term rolls right off of Jenna’s tongue, as she’s been asked countless times about her husband’s diagnosis. In simpler terms, Josh has a cancerous tumor in his brain. Jenna started a blog shortly after Josh’s diagnosis, sharing “I have created this blog mainly to keep everyone updated on what is going on, but also as a therapy for myself. I am in a constant state of needing to express my thoughts and feelings.” Included below is a glimpse into the life Jenna and Josh are adjusting to together and Jenna’s points of view and realizations, as her husband’s caregiver.

“There is no guideline or instruction manual on how you are supposed to deal with this all.”

The therapist explained to me that I am going through the stages of grief. I am grieving the old life I had. I am grieving the life we had planned to have. I am grieving the pregnancy that we were supposed to be experiencing right now. In a matter of an hour she had put my entire life in perspective. I want it to be known that I, in no way shape or form, blame Josh. This disease is something that literally came out of nowhere and knocked us both on our asses. There is no guideline or instruction manual on how you are supposed to deal with this all. Each person grieves in their own way. For me, it’s bottling it all up until I completely crack.

For Josh, it’s humor. He makes light of situations and tries his hardest to be strong for the both of us. I know a lot of people constantly say, “oh you’re handling this so well” or “man, you guys are always so positive” but if they all knew the number of times during the day I break down and cry they would all be surprised. I’m not here for a pity party, I am just here to show that we are in fact human. I am merely indulging you all on a part of my life that I keep very personal. I sat on the fence for a while on reasoning how much is too much to share. I have come to the conclusion that I’ve already shared a lot. Everyone has read our process with freezing the sperm and fertility so that’s enough TMI already. Am I going to share every down moment in my life? No. Am I going to mention every time Josh and I have a fight? No. But I do think it needs to be known that we’re not living this Leave it to Beaver lifestyle. We fight. We argue. We cry. We laugh. We make up. And we go on with our lives.

This has by far been the most trying thing on not only us but our marriage as well. I take every day with great appreciation, for it is one more day that I have with my husband. I fight with him. I yell at him. I regret doing so more often than I used to, but I am only human. I try hard, really hard in fact to make sure his life is as easy as possible. That he doesn’t have to worry about the medications or the appointments. Yes, we spend a lot of time at the movie theater and yes, we have seen pretty much every movie currently out right now. But honestly, please, tell me where else can I take a cancer patient?! He enjoys them. I get a break for a few hours. It’s a win-win. So to all, let me remind you, there is no manual. There are no guidelines. We are literally flying by the seat of our pants and just praying we are doing it right. Do we mess up? Yes. I often worry about that, but we’re making the best out of a crappy situation and I’d say we’re doing pretty good.

If anyone, and I mean ANYONE is feeling depressed, overwhelmed, or just feeling the need to talk it out with someone, please don’t be afraid to ask for help. I wasn’t too proud to ask for it, I just assumed that I was doing okay and that I didn’t need it. Once I started talking, I literally had word vomit and I couldn’t stop. It’s so freeing to finally be able to tell someone something that you have kept bottled up inside. So please, don’t be afraid to ask for help when help is needed! 

As far as me, I am still a work in progress. I am changing around therapists now as I couldn’t stand the one I have. I do believe that sometimes it’s good to shop around for a therapist. You shouldn’t be afraid to do so. For me, it’s all about a comfort level. I have to click with you before I am able to tell you my deepest darkest secrets. I have had two in the past few months, both of which I didn’t click with. One focused too much on my marriage and making issues that weren’t there. And one focused too much on me emasculating my husband (YES, she said that). I am not looking for a miracle worker. I realize that their job is to help me sort through my problems. But the advice they were offering me was unrealistic for a wife taking care of her husband who has cancer. Her big advice was to go Target by myself. Yes, I am going to leave a seizure prone person in a room by himself so I can go get away for an hour?! Uh no. Her other advice was that my life revolves too much around his cancer. UH EXC– USE ME?! You don’t ever tell a mother that her life revolves too much around her child. You don’t ever tell a career woman that her life revolves too much around her career. But because my husband has cancer, and I am his main caregiver, it’s wrong that my life revolves too much around him? He is my life. He is my everything. So no, I don’t work. I don’t go out with friends. I don’t go shopping by myself. I can’t tell you guys the last time I got my hair cut. My nails are trashed and we won’t even go into shaving my legs. Yes, I have let myself go. Before anyone says it, yes I know I have to make time for myself. I have to put my needs in there too and I do. I am merely stating all of this to give everyone an idea. But spend a day in my life where I am constantly caring for another human being and you’ll see why. No, he’s not in a wheel chair and he doesn’t physically depend on me. But I try every day to make sure his days are easy and stress free. So what if my house isn’t clean, if the dishes aren’t done, and if I didn’t make it to Target by myself, well then that’s fine. Because I know my husband is happy, I am happy. And to me that is all that matters!

You can follow Jenna and Josh’s journey here!

Starting & Building Families After Transplant

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#facingtheissues, by Elizabeth Saylor

Many young adults will go through a bone marrow or stem cell transplant in as part of their cancer treatment. BMT/SCTs are intense medical processes that offer lives saving options for young adults but can greatly compromise fertility.

I have been privileged to serve many young adults before and after transplant. One couple, Phil and Jes Koubik are kind enough to share their thoughts on the journey to build their family and to welcome their son Nicholas into the world.

“…I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur…but sometimes that’s when real blessings truly happen and you find out just how amazing life truly is.”

Being a young adult and going through cancer has been one of the most difficult experiences my wife or I have ever had to face. You [are forced to] deal with…fertility issues, from all the treatments including chemotherapy, radiation, and even getting a stem-cell transplant.

Now the doctors told us that I’d most likely be infertile from everything I went through and, while there’s a small chance that my fertility might return, I’ll likely be incapable of having biological children for the rest of my life. So a couple of years ago, I went through testing and found out that I am incapable of having my own biological children. Then towards the beginning of December 2013, my wife and I decided we wanted to explore options for having a child by other means as we did not want to wait hoping that my fertility might come back and then find out that we waited too long that my wife eventually lost her ability to have children. After talking about the various options, my wife and I decided that we would use donor sperm and IVF to fertilize my wife’s eggs. So we officially started our journey towards parenthood Christmas Eve 2013 by having our first appointment with the fertility center Shady Grove.

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We acquired our donor sample and proceeded through one round of IUI which did not work. We had one vial of our donor sample left and thus made the decision to go straight to IVF. Well it turned out to be the right decision as my wife got pregnant on the first try in April 2014. Finally, our dreams of becoming parents was finally coming to fruition. I must admit that since we used donor sperm, I did have some concerns about how I’d feel going through this. However, I must say that the concerns started to disappear fairly quickly and by the last few months of our pregnancy, every single concern I ever had completely disappeared and even felt strange to me as though those concerns were from another person entirely and not myself. This was going to be my son, biologically or not and nothing was going to change that. I’ve learned that family and especially parenthood isn’t just a matter of biological relationship but whether there’s love and the willingness to be there for the child and make every attempt to give them the best life possible. I’ve heard the quote about it taking more than biology to be a parent. It takes someone willing to be there day in and day out striving to give their child the best life possible. Knowing this, it never became more real then the day my son was born which was December 23, 2014. There are no words or expressions which can do accurate justice to the pride, happiness, and elation I felt that day my son was born. That day instantly became my favorite day and experience EVER making the day I married my wife fall into second place.

So while this journey has been a long and arduous one, it has been well worth the wait. While my son Nicholas shares no biological factors or similarities with myself, he is my son nonetheless. There is no one who can take that away from me and now I’m living the dream of being a parent. It may not have been in the way I always thought it’d happen growing up and certainly didn’t plan on cancer entering my life and making changes to how I thought my life would go. However, I wouldn’t change a thing as having gone through everything we’ve been through and struggling to achieve something many take for granted, has made my wife and I so incredibly thankful and appreciative for everything God has given us. We’ve realized the incredible gift that becoming parents to a child truly is and neither of us take our son nor our experiences for granted. So I think my wife and I would tell anyone going through cancer and facing many of the same decisions that things may not go exactly as you planned or thought that they would occur….. But sometimes that’s when real blessings truly happen and you find out just how amazing life truly is. Never give in and never give up!!!

Sincerely, 
Phil
By |April 10th, 2015|Inspiration|0 Comments

Adolescent and Young Adult Cancer Awareness Week: Part 3 of a Three-Part Conversation with Survivors

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The first week of April is Adolescent & Young Adult Cancer Awareness Week – which is a big deal around here! To commemorate, we have interviewed several members of our community. Each has been affected by this illness and faced that diagnosis with grace. Below is a compilation of their answers, which paints a broad picture of what young adults facing cancer experience. This is part three of a three part series.  

“I thought, ‘What a great way to give back to the running community, meet some cool people, and find some more purpose in my running.’ Little did I know how much CT5K and UCF would change my life.”

Everyone’s cancer journey takes twists and turns. Sometimes the road is smooth, other times it is full of bumps and potholes. We are very proud to say that no matter where a survivor is on their journey we are able to give them the support they need.

Q: How did you get involved with the Ulman Cancer Fund for Young Adults (UCF)?

James Berry: I actually found out about the Ulman Cancer Fund for Young Adults through an ad on Facebook for their 4K for Cancer Run, and after looking into it for a few minutes I decided to make a spur of the moment decision and signed up before really talking to anyone about it.

Jennifer McRobbie: I started out as a Sherpa for Cancer to 5K (Ct5K) in 2009.  I was getting back into running, but looking for some more meaning to keep me going.  A friend, who knew Ct5K founder Holly Shoemaker, told me about the program.  I thought, “What a great way to give back to the running community, meet some cool people, and find some more purpose in my running.”  Little did I know how much CT5K and UCF would change my life.

Kelsey Barbour: I actually just happened to stumble upon the UCF. A banner ad on the side of my Facebook popped up, advertising the 4K for Cancer program. I clicked on it, perused the website for a bit and after reading more about 4K for Cancer, I knew I had to get involved.

Jason Greenspan: I found out about the UCF through Ct5K. I was with my stepdad one day at a community center and stumbled across the last brochure they had for Ct5K. I kind of thought it was fate because I’ve always wanted to run a 5K. So I looked it up to get more information and signed up for it. I am very happy to say that I’m currently the fastest Ct5K participant to date.

Melinda Hood: I got involved by doing a 5K / 1 mile run/walk that they hosted at Stupid Cancer’s national conference. Laura told me they were launching a Ct5K program in New York City so I signed up!  It was a great experience and I can’t wait to participate again!

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Sonja Wagner, 2015 4K Participant & Survivor.

Melinda Hood

Melinda Hood, Cancer to 5K participant

“My cancer diagnosis was originally just my own problem. It was personal and my only goal was to keep going. Now that my struggle is done, UCF has given me the ability to share my story and give inspiration to someone else that could be going through the same situation as me.”

Q: Did your experience with UCF open up new venues of support that weren’t available to you before?

Christa Bennett: Absolutely! My patient navigator, Allison Issacson, helped me get involved with…Cancer To 5K, the Jacquline Shearer Gala, support groups and new friendships with other survivors. I’ve had an amazing experience with the Ulman Cancer Fund and I’m forever grateful!

Gino DeFilippo: My cancer diagnosis was originally just my own problem. It was personal and my only goal was to keep going. Now that my struggle is done, UCF has given me the ability to share my story and give inspiration to someone else that could be going through the same situation as me. Another teenager who has to miss school can now talk to me about what to do and have some reassurance that graduation is still possible and that you can make new friends after this horrible journey.

Sonja Wagner: Even though I haven’t started the 4K ride yet, I still feel like I have received so much support. Most of the other participants are friends/family or caregivers of a cancer survivor so everyone is so kind and understanding. I actually had to have surgery last week to remove a cancer mass from my lung just 11 weeks before starting our ride. I was so nervous and was really stressed out about not being prepared physically for the ride after learning that the surgery would set me back a few weeks. However, with the support of my team, I have made the decision to continue my plan to ride this summer and don’t have a doubt in my mind that they are all cheering me on!

Olivia Marquart: The staff at the Ulman Cancer Fund has provided me with a group of people that are constantly supporting me. They have offered several different opportunities to connect with other people who are passionate about the young adult cancer movement. They have helped me to get involved with the Key to Keys experience this April. They were the first group I met that focused on supporting young adult cancer patients. Any other organization I went to I felt out of place because I was too old for pediatrics and too young to be in the adult side.

Shannon Shepard: The UCF has made me be a more outspoken person. When I was first diagnosed, there was not a support group for young adults with cancer. It was tough to tell my story and how I felt about things. When I found out that we had a patient navigator and she told me she was getting a group together, I thought that was a great idea. Now, I know there are others like me that are having a hard time just like me.

Brianne Kennedy-Brooks: Cancer to 5K was, and is, an integral part of my cancer journey and I am so incredibly grateful for the opportunity to reclaim my body and for the amazing volunteers who believed in me and pushed me to get back out there. I, honestly, could talk for hours about how amazing I think this program is. CT5K helped me to safely return to the world of running and to start feeling like my body was my own again. THANK YOU for everything you do to support this amazing program.

 

This is part three of a three part series. You can read the previous installments here and here. To be part of the conversation stay connected with us on facebook or twitter. Cancer Changes Lives…So Do We!

Adolescent & Young Adult Cancer Awareness Week: Part 2 of a Three-Part Conversation with Survivors

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from left to right: Gino, Jennifer, Kelsey, Christina, Melinda

 

The first week of April is Adolescent & Young Adult Cancer Awareness Week – which is a big deal around here! To commemorate, we have interviewed several members of our community. Each has been affected by this illness and faced that diagnosis with grace. Below is a compilation of their answers, which paints a broad picture of what young adults facing cancer experience. This is part two of a three part series.  

“My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did.”

The types of reactions that cancer patients receive from the public vary. Some interactions can be uplifting. Others, while well intended, can be frustrating. The only thing that remains constant is that everyone, from family to people on the street, seem to want to weigh in on your diagnosis.

Q: What has been the most encouraging comment or response you received during treatment?

Christa Bennett: The most encouraging response was from a friend who said that I helped her get through her hard days when she would think of my strength. That was encouraging; it makes you feel like you have to keep fighting because people need you to be strong. I also had friends, nurses and strangers praying for me and just loving on me in my time of need.

Gino DeFeilippo: All my friends were very supportive of my diagnosis. A lot of them set up a fundraiser and stopped by the hospital to give me anything they thought would be helpful. I had a collection of maybe 5 different types of blankets at the end of my 5 month stay in the hospital.

Sonja Wagner: I consider myself really lucky to have a very supportive group of friends who have been by my side for the last five plus years and four battles with cancer. Everyone was also awesome about not treating me differently even when the side effects from chemo, radiation, and surgery started to take over. Instead, they helped me shave my head, pushed me in my wheelchair when I needed it, and always made sure I had food they knew wouldn’t make me sick.

Shannon Shepard: The most helpful response was from my family and the nursing staff. My mom was there majority of the time during the heavy treatment. When she wasn’t able to come and see me, the nurses who took care of me would play games, watch movies, and talk to me.

Kelsey Barbour: …everyone was extremely supportive, and even people I may not have been in contact with frequently reached out to me. I received wonderful cards and well wishes through social media, which was so touching.

James Berry: My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did. The side effects from my treatment were flu like symptoms, like fatigue, nausea, and extremely sore joints. Also my hair began to thin and fall out, and in hindsight I should have just cut my losses and shaved my head, but losing my hair would actually make me look like a cancer patient. Fortunately, my balding head didn’t affect the way my friends treated me throughout the year.

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Kelsey Barbour training for the 4K

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Jennifer McRobbie (third from left)

“The most frustrating response,  to be honest, was all the people that kept telling me, ‘You got this. I’m not worried.’ Or the alternative, ‘You’re strong.  You’ll be fine.’ Those statements were frustrating for me because the underlying message, at least in my chemo-addled brain, was that I didn’t have a right to feel scared.”

Q: What has been the most frustrating comment or response you received during treatment?

Brianne Kennedy-Brooks: The most frustrating responses–though made with good intentions–were always the initial, aghast responses of “Oh! But you’re so young!” when they would learn I had cancer. I understood their knee-jerk reactions of shock (after all, I felt it too), but it definitely made me feel more isolated when I walked around the cancer center and everyone just knew me as “the young, pretty one who brings presents.”

Olivia Marquart: The most frustrating part of treatment right now is knowing that my diagnosis will be a lifelong issue. Right now with my treatment plan I do not have an end date for chemo like most patients. Trying to explain that to people outside of the cancer world are sometimes frustrating because they don’t understand that every cancer is different. There is no cookie cutter treatment plan when it comes to cancer.

Jennifer McRobbie: The most frustrating response,  to be honest, was all the people that kept telling me, “You got this.  I’m not worried.”  Or the alternative, “You’re strong.  You’ll be fine.”  Those statements were frustrating for me because the underlying message, at least in my chemo-addled brain, was that I didn’t have a right to feel scared.  That if I had a bad day, it meant I wasn’t “doing cancer the right way.”  That I had to keep up the strong warrior front in order to live up to their “not worried” feelings.  It’s hard enough to say to your friends and family that you’re feeling vulnerable and scared and upset. It’s even harder to be vulnerable when you feel like there’s an expectation that you’re some battle-hardened soldier in the war on cancer.  These types of statements don’t acknowledge the range of emotions you feel upon diagnosis and during treatment.

Melinda Hood: By far the most frustrating thing, and this still happens, is the response “but you’re so young.”  Uterine cancer is most common among women in their 50’s and 60’s. I remember being in my oncologist’s office waiting for my appointment. A women leaned over and said, “It’s so nice that you’re here with your mom.” I just did the smile and nod. My cover was blown when my name got called for my appointment.

This is part one of a three part series. To be part of the conversation stay connected with us on facebook or twitter. Help spread awareness about Adolescent & Young Adult Cancer by sharing this post with family and friends! Cancer Changes Lives…So Do We!

Adolescent & Young Adult Cancer Awareness Week: Part 1 of a Three-Part Conversation with Survivors

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from left to right: Olivia Marquart, Jason Greenspan, Sonja Wagner (in yellow), Brianne Kennedy-Brooks (in yellow), Shannon Shepard

The first week of April is Adolescent & Young Adult Cancer Awareness Week – which is a big deal around here! To commemorate this special occasion, we have interviewed several members of our community. Each has been affected by this illness and has faced the diagnosis with grace. Below is a compilation of their answers, which paints a broad picture of what young adults facing cancer experience. This is part one of a three part series.  

“Cancer was something that happened to older people who had lived their lives already and were on their way out. Cancer wasn’t something that should happen to someone who was young, healthy and had so many plans ahead.”

Every year 70,000 young adults are diagnosed with cancer. That’s a big number – a really big number. And still, one of the biggest hurdles young adults with this disease face are feelings of isolation. While it isn’t uncommon, unfortunately, to know someone in their 50s, 60s or 70s with cancer, it is a different story for those under the age of 40. When it comes to finding peers to relate to, young adults with this illness struggle.

Q: How old were you when you were diagnosed? Before your diagnosis did you know anyone your age with cancer?

Christa Bennet: I was twenty-four, turning 25. Before being diagnosed I didn’t know anyone, personally, with cancer.

Gino DeFilippo: I was diagnosed with acute myeloid leukemia when I was sixteen in 2012. At the time I didn’t know anyone with cancer. I just kind of thought it was something that happened when you got older and there was no possibility for anyone active and healthy at my age. I knew of a few people who had cancer as a kid, but no one that had it as a teenager.

Sonja Wagner: I was nineteen years old and a sophomore in college. I had never met anyone my age who was suffering from cancer.

Brianne Kennedy-Brooks: I was diagnosed at the age of 30, with no family history, no risk factors, no warning signs…nothing. I was a rule-follower when it came to my health in every aspect. I was a girl who did everything right and never in a million years thought it could happen to me. Cancer was something that happened to older people who had lived their lives already and were on their way out. Cancer wasn’t something that should happen to someone who was young, healthy and had so many plans ahead.

Jason Greenspan: I was 18 years old when I was diagnosed with Testicular Cancer. I was diagnosed right before my Senior prom and graduation. I did not know anyone my age at the time that had cancer.

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Olivia Marquart

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Jason Greenspan

“When I was diagnosed, some friends were paralyzed with fear. Some sprang into immediate action. Others looked at me like they didn’t know me any more.”

Finding a reliable network of peers can be difficult for young adults facing cancer. When turning to friends who have no prior experience with a cancer diagnosis, support can be mixed at best.

Q: How did your friends/peers react to your diagnosis? And how did they react to the side effects of your treatment?

Olivia Marquart: Everyone reacted in their own way when they found out about my diagnosis. I had friends who heard my news and immediately offered their support. They were willing to help in any way. My friends understood when I was tired or couldn’t do much. They were more than willing to come visit or watch movies when I was on the couch resting. I also had people who heard my diagnosis and cut me out of their lives. They stopped talking to me and acted as if my diagnosis was an issue that wasn’t their problem.

Shannon Shepard: When I first told my friends I was diagnosed with cancer, they were sad and scared. They would keep in touch all the time. When I started having side effects and going through several complications, they started to drift away and not keep in touch.

James Berry: My friends and peers were super supportive of me during the time leading up to my surgery and during my year of treatment on interferon. They continued to invite me to everything and treat me like they always did. My family and friends are what got me through my treatment and I can’t thank them enough. The side effects from my treatment were flu like symptoms, like fatigue, nausea, and extremely sore joints. Also my hair began to thin and fall out, and in hindsight I should have just cut my losses and shaved my head but losing my hair would actually make me look like a cancer patient. Fortunately my balding head didn’t effect the way my friends treated me throughout the year.

Jennifer McRobbie: When I was diagnosed, some friends were paralyzed with fear. Some sprang into immediate action. Others looked at me like they didn’t know me any more. But, I can’t blame them. I didn’t really know myself any more either.

During treatment, I think people were surprised that I didn’t look *more* terrible. So, there was a lot of surprise that I was out and about.  I chose not to wear scarves or a wig when I lost my hair.  So, I just traipsed around bald. It was an issue of “owning it” for me.  But, my openness about it all might have made it harder on some of my friends. I mean, it’s hard to ignore when the symptoms are right in your face. Most of my friends were great about it and never showed that they were uncomfortable – even if they were.

Kelsey Barbour: Initially, I think we were all pretty shocked. In college, we tend to think we are invincible and our biggest challenge is getting out of bed for an 8 AM class. But I think being diagnosed with cancer really made me and even my friends take a step back. However, right from the start, everyone was so incredibly supportive of me and my family.

Melinda Hood: My friends and peers were in shock at first.  [But] overall, they were amazingly loving and supportive.  A friend who came over the night I found out brought a bottle of booze.  We talked and drank most of the night.  My main side effects were menopause, because my ovaries were removed, and the physical effects of the surgery.  My friends and my work were extremely understanding and accommodating.  “Need a nap in the middle of the work day?”, sure there’s the couch. “Pajama bottoms more comfortable to wear to work after surgery than regular pants?”, no problem!

This is part one of a three part series. To be part of the conversation stay connected with us on facebook or twitter. Help spread awareness about Adolescent & Young Adult Cancer by sharing this post with family and friends! Cancer Changes Lives…So Do We!

Just Say No to Tanning Beds!

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#facingtheissues, by Sharon Curran

Spring has finally sprung here in Baltimore (though the brisk drizzles we’ve had might make you say otherwise)! No one will argue that it’s been a long, cold, grey winter and most of us are looking forward to the warmth of the sun and a glow on our skin to bring in the summer. For some that means getting a jumpstart on their “tan.”

Now let’s get serious…ultraviolet radiation from direct natural sun exposure or indoor tanning poses a serious health risk. Specifically it can cause skin cancer. There is an abundance of health promotion education available regarding the risks of tanning. Despite that, a large percentage of young adults, particularly high school and college aged young women, reportedly continue to indoor tan. In a recent study published in the American Journal of Health Promotion, the authors reported the “psychosocial motivations to tan sometimes outweigh the young women’s concern for the health risk”. (Heckman, et al , 2014, p. 168). The article cites the most common reasons for regular indoor tanning are “appearance enhancement, direct emotional effects such as relaxation, enhanced mood, stress relief, and improved energy”. (Heckman, et. al., 2014, p. 168). The article addresses both the psychological and addictive symptoms of young adult female tanners.

This is a really serious topic, when it comes to indoor tanning “just say no!”. To add a little FUN to this Facing the Issues post, I’d like to share a few songs about the sun!

 

Source Citation

Heckman, C. J. , Cohen-Filipic, J., Darlow, S., Kloss, J. D. , Manne, S. ,Munshi, T., (2014). Psychiatric and Addictive Symptoms of Young Female Indoor Tanners. American Journal of Health Promotion. Jan/Feb2014, Vol. 28 Issue 3, p.168-174.